"Look At Me"

Thursday, April 26, 2012

Babies develop at different rates. Everyone knows this. Yet at the doctors office, at the well-child checks they still go through a check-list to see whether your child is developing "normally." I didn't know it at the time, but the doctors are checking for "red-flags" for autism or developmental delays. Evidently, babies "could" be clapping at 7 months. They "will probably" be clapping at 8 months. They "should be" clapping at 9 months. And they are "supposed to be clapping by 11-12 months. This was one of the BIG milestones my son missed. Among others. He also didn't point, or wave, or say Mama or Dada or respond to his name.

I vividly remember the day my son clapped for the very first time. He was 2 years old. I'd been working with him for months. Every time he did something, like give me eye contact, I'd clap for him. Then I'd take his hands in mine and make him clap as well. Well, one day when we were at the park, Derek was going down the slide with me. I encouraged him to go down by himself. When he finally did it, I yelled, "YAY, DEREK!!! You did it!!!" And I started clapping. He looked up at me with a big smile and STARTED CLAPPING. I freaked out. It was a miracle. I knew in that very moment that I could still reach my son. I knew that he was not lost forever. Sure, it had taken him an extra year, but from that moment on the baby books didn't matter. They went in the trash that very night. I let my son be on his OWN timetable. I knew that if I was patient enough and worked hard, I would see my son reach every single milestone...and I consider myself lucky. I've seen more miracles in my lifetime than I can count.

Friday, April 20, 2012

This was originally published 4/20/12, but I'm reposting and dedicating it to Mikaela Lynch, Drew Howell, and Owen Black--three autistic children who drowned this week. To their families and friends, I am so sorry for your loss.

I am not perfect. I am far, far from it.

It is easy to judge what you don't understand.

The parents of Mikaela Lynch, a little autistic girl who drowned this week, are being criticized. People are saying she was a bad parent, because her child was prone to wandering.

It hurts me to read. My child is prone to wandering too. He is also drawn to water. Does that make me a bad parent?

I have had the scariest thought in the world this week: It could have been Derek.

See this sign? There are now two like it in the small town where I live. Why? Because I live near a main street. Tractors go down this street often (I live in a farming community). Kids on their way to school speed down the road. They don't pay attention to whether or not a little boy is out wandering by himself. I'm talking about my son, who has no concept of danger. You can lecture me as much as you want on how I need to keep a closer eye on my child. I am not perfect, though I try to be. I keep safety locks on my doors and watch my son as carefully as I possibly can. But he is an escape artist. And if the door is left open by my OTHER son, for even a minute, Derek is out the door before I can say "STOP."

Derek's language has improved 10-fold in the past year and a half. He is speaking some, and understanding LOTS. He knows what "No" means. If a ball is rolling toward the street and Derek chases after it, there is maybe a 50/50 chance that he'll stop when I yell. This was not always the case. In the summer of 2009, my son had no language at all. He didn't know that words had meaning. If I yelled "No" back then, nothing happened. He didn't even respond to his name. That summer was terrifying. I lost Derek 3 separate times (once for a total of 10 minutes)! I grew eyes in the back of my head that summer. I became what most call a "helicopter parent."

When you lose a child, for any amount of time, something happens to you. The fear is immobilizing. Visions of your child splattered on a highway invade your thoughts. Images of them floating face down in a pool or lake haunt you. And even thoughts of your child being snatched by a kidnapper surface.

How do I lose Derek? Let's see. One time it was because I was putting sunscreen on his brother and Derek turned the corner and went behind the house. 30 seconds and he disappeared. Another time it was because Tyler got bug spray in his eyes and I was trying to help him get it out. Yeah...things like that.

Ten minutes is not a long time. Ten minutes is nothing. But when you cannot find your child? Ten minutes is an eternity. When I finally found Derek that final time, in the neighbor's backyard, I vomited into the bushes. I was shaking so badly my teeth were chattering.

I vowed then and there that I would do everything and anything I could to keep my child safe. I notified my local police/fire department that I had an autistic child prone to wandering so that they would be aware of the situation. I talked to city officials to get the sign up above approved (it took 7 months of researching, attending town meetings, and bugging city officials). I also got my son a Medical ID for his wrist to notify people that he is autistic and nonverbal. (He cannot give you his full name, address, and phone number when asked. Half the time when I ask what his name is, he answers "Mommy.") I wish our town offered Project Lifesaver, but it doesn't. Maybe someday.

To the families that lost their children this week: my thoughts and prayers go out to you. May you feel the arms of the special needs communities around you. We are all in this together and we support you. You are not alone. We will never judge, because we have been there too. We are crying with you.

Monday, April 16, 2012

Before I get into what I've been doing the past few days, I have to tell you a story. I met Derek's future self. Does that make sense? I'll try to explain. I saw a father, carrying an 8 year old little boy in his arms yesterday. The boy had his arms around his dad's neck and he was resting his head on his shoulder. He didn't look like Derek--he had lighter hair and blue eyes. But there was something about him...I kept my eye on him (I was at an Autism Walk and the kid liked the bounce house in front of my table, so I got to be a people watcher). I saw him interact with his dad. I watched as he jumped in the bounce house and his eyes lit up with joy. He held his hands the same way and he had the same mannerisms as Derek. He also walked/galloped the same. When he smiled it lit up his face.

The dad and the son came over and talked to me for a little while. The boy didn't say much to me, but he did speak to his dad. I could tell that communication was not easy for him. Neither was eye contact. His dad had to prompt him to speak to me. Oh, but when that beautiful boy spoke to me, and actually looked at me? It was all I could do not to cry. It was Derek. IT WAS DEREK IN 4 YEARS. It gave me hope, since the boy was talking, but it was also hard to see. It was obvious that the poor kid was having trouble with the crowd of people and all of the noise. I wished there was something I could do to help. The dad told me that his son was in an intensive therapy program and that he hadn't spoken until age 5. I was amazed how well he was doing. And I could see, physically SEE the love radiating out of the father's eyes. People like that give me HOPE. They are the ones that keep me going, because I know--I KNOW--that they will never give up on their children...

I don't know what else to stay. I'm an emotional wreck. The past four days have been a rollercoaster. I attended the 2012 Nebraska State Autism Conference in Lincoln, NE on April 12-13. It was phenomenal. I learned so much in those two days that I cannot POSSIBLY try to recap everything in a blog. At least without boring people to tears. I laughed. I cried. I wrote down things I needed to do. And at the end of each day, I crawled into bed DRAINED. I attended seminars on keeping children safe (WHERE IS MY "AUTISTIC CHILD IN AREA" SIGN, AXTELL?????), bullying, communication, and best of all? A seminar by a woman who's MOM had Asperger's. Can you imagine being raised by someone on the spectrum? Talk about flipping my mindset around. I like to think of things from different perspectives. This daughter and her mom have overcome so many obstacles. It was more than inspiring. It was unbelievable...
Oh, by the way, the mom was included in Temple Grandin's new book: Different, Not Less. Her name is Moppy Hamilton. She autographed my book for me. :) Her story is incredible.

I also met Dr. Koegel, who was on Super Nanny and worked with autistic kids. They showed this clip at the conference. I was a mess. A non-verbal little boy says his very first word on camera: "Tickle." Derek's was "Bubble." I still remember the day. Memories...I wonder if I'll ever be able to think back to Derek's first years without CRYING. Everyone else remembers their children as toddlers with smiles and talks about how cute they were. I bawl.

THEN, on Sunday I went to the Autism Meet Optimism Walk for Recovery in Manhatten, KS.
It was the most organized walk I've ever been to. (This is where I met the boy and his dad). They not only had a walk, they had bounce houses, horse rides, a train, races, and all kinds of other events for kids. I was wishing I could have brought my children, but then I would have been chasing them rather than manning my table.

To all of you who stopped and talked to me: THANK YOU for showing interest in the project. I loved talking to you and hope to hear from you soon.